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Tuesday, May 17, 2016

A Long Overdue Update

This has been the first update on Paul that we have given since his fourth surgery done in October 2013. He is potty trained, talking in sentences, and has been thriving to learn and enjoy his siblings! His name for mostly everyone is "Little Turd" haha.

Pauly was seizure free for two years. In November 2015 my mother and my grandmother noticed his eyes deviate to the right and stay for a while. They asked him what was wrong and he giggled and said "Nothing". They then thought that this was nothing. It was fairly subtle. This happened several times and my family and I continued to pass it off as nothing. I didn't want to believe that this could possibly be seizures. A few weeks later Paul began having these episodes once a day. They progressively got stronger where his head and eyes jerk to the right along with his arm---they even began causing him to fall. Now we are having up to five clusters of these a day lasting up to 13 minutes. The minimum we have caught in a day has been two. His right eye is becoming a nagging problem for him---and he lets us know about it (not fully sure why it is just his right eye---we have never dealt with the seizures bothering them). About five minutes after a seizure he will say while pointing at his eye "Now I can see things again". He has gotten weaker on his left side as well and during his seizures almost all mobility is gone on his left side. The weakness has definitely caused some frustration with his mobility and lots of extra scrapes.

We absolutely hate seeing that fogged over look in his eyes again...a look that we all tried to forget and hoped we wouldn't see again. We worry about regression and night time seizures. He has one that we know of around the middle of the night so we stay up and wait for it. His siblings have readjusted, once again, to looking for his seizures and making sure he sits down with them so he doesn't fall and hurt himself. ...even his two year old little sister sits with him and asks if he is done with his seizure. We are a very emotional house right now waiting----impatiently----to see which hospital can see Pauly the soonest and hopefully remove the dysplastic areas of brain so he can enjoy his life without all of these seizures.

We will be updating more often as things get along with Paul. We will also try our best to keep up with his overall development in the future in hopes of helping other families!